Stayin’ alive

A kidney dialysis/transplant diary

Ice is nice

Yes, it is. The longer I’m on dialysis the more adamant I am about ice. I want it.

If I’m limited in the amount of fluid I can have, I want it so icy it’s steaming from the cold, so icy I can feel it slide all the way down my throat. And once the liquid’s gone, you can bet your sweet icy-cold tea I’m gonna crunch and munch the ice. Cube by cube by cube.

Frigid as it was yesterday, I still asked for that lovely cup of ice at dialysis. It’s wonderful ice for chewing: Five or six cubes can sit comfortably in a plastic spoon that’s just the right amount to keep your mouth moist and cool.

I don’t think I’m suffering Pagophagia, and I don’t think it’s Pica. I think it’s a way to assuage part of my thirst or at least trick my mind into thinking I’m ingesting more fluid than I am.

They say chewing ice — and I certainly do chew it, can’t wait for it to melt — is bad for your teeth. Lucky for me I only have four teeth remaining and they aren’t the molars I use to grind my ice. Somehow the cold grinding process is as soothing psychologically as the trickle of icy fluid.

Chewing ice, it seems, isn’t a peculiarity exclusive to dialysis patients. They’re are many cube munchers out there and they’re making their voices heard. Take a look at this article from The Wall Street Journal.

Fistula postponement

Nurse Sue, who will be helping to produce what we hope will become buttonhole accesses for my fistula, did examine it yesterday. She marked the target area for the first needle (it will be a combination of using the catheter and one needle to begin) and told me to apply the numbing cream about an hour before my Thursday treatment.

I drive a manual four on the floor shift car. (No, it’s not a jazzy foreign sports car nor is it a truck. It’s a 1993 turquoise Topaz. Stop laughing right now. It serves my purposes and my Mom can get in the passenger side even with her fused right knee.)

This is not such an abrupt shift of topics when I tell you that the other day while I was driving, I put my hand on the shift gear and thought, “Wow, that vibration feels almost exactly like the ‘thrill’ in my fistula.” It’s really strong and noticeable since it’s in the crook of my elbow. Sometimes I watch it surge and wonder if an alien is going to burst from its confines.

Anywho …

Thursday appears to be THE day. I did find a St. Ficare medal and have been wearing it for about 10 days now.

January 30, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 6 Comments

Checking in and battling winter

Just rescheduled my dialysis treatment for 10:30 this morning.  Have to cut the workday short so I can – I hope – miss the worst part of the predicted blizzard and still get a treatment in.

This winter’s persistent snow, ice and cold have proven a challenge, too, as far as making it to treatments. It seems the weather gets lousy on Tuesdays, Thursdays and Saturdays.

The furosemide is pulling some more fluid off, but it’s amazing how rock-hard the pockets of fluid remain. If it were someone else suffering it, I’d find it terribly interesting. Since I’m the one suffering this, I find it terribly inconvenient, annoying, more painful than I’d expect and a pain in the … well, you get the picture.

I took a sick day yesterday because my arthritis (left hip) and the swelling and zingers in my right leg were giving me real problems.  I took Tylenol and finally a Rquip in the morning (I usually don’t take the leg meds until evening and before treatment) before the pains subsided enough to get some solid sleep.

Guess I’d better order some cheddar since I seem to be headed for a Whine and Cheese party. 

Damn. I just realized I’ve got the wrong top on, if they want to try using my fistula for the first time today. Guess I’ll have to buzz home and change.

Just talked to someone in Des Moines who said the temperature there is “dropping like a rock” and snow flurries have started.

Oh, goody.

January 29, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

A typical or atypical way to cheer up?

womanwalkingdiealysis

Take food, drink, alcohol, salt, cigarettes and – frankly – sex away from an addictive personality and what’s left to cheer you up?

Shopping!

Case in point: See the above additions to my spring wardrobe.  Might as well be political while reclining.

Yeah, I know they’re a bit macabre, but they make me smile a crooked smile and I like that.

Another mood lifter was the bright bouquet of flowers left on my desk by another coworker (who works in a different department here but who has been reading my blog) left on my desk. How nice. Lavendar and white daisies, red-tipped carnations and purple stock. All tied with a pink organza bow.

My doggy-doodoo down in the dumps mood was also slightly lifted this morning when I read there may be hope in eliminating anti-rejection drugs for kidney transplants.  That would take a huge worry physically and financially from patients.

The physical worries? Well, anti-rejection drugs suppress the immune system to keep it from trying to force the foreign organ from the body.

The drug of choice is prednisone. Here are some of the more bothersome side effects: 

These include, but are not limited to, fluid and sodium (salt) retention, high blood sugar, muscle weakness, bone disease, stomach ulcers, impaired wound healing, acne, mood swings, anxiety, cataracts, glaucoma, weight gain, hormone disorders, and growth suppression in children. — The USC Kidney Transplant Program

Not a pretty list of side effects. Almost makes one wonder if the cure is as bad as the disease. Guess I can’t say worse than the disease since untreated kidney failure means life failure.

So the idea that taking bone marrow from the donor to recalibrate or reprogram the recipient’s marrow manufacturing sounds pretty good to me, especially if the side effects are less or much less severe than the prednisone side effects.

The financial worries: Anti-rejection drug therapy is extremely expensive and continues — now — for the rest of the recipient’s life. We’re talking multiple thousands of dollars per month (but still cheaper than dialysis).

I’m sure Diane Langton found much irony in the release of this study information now since the recipient of her kidney, Jim Wilson, died this month. Because of his suppressed immune system, he caught a serious case of flu which ended up causing heart failure. Who knows, maybe the bone marrow treatment at the time of transplant or shortly thereafter would have saved Jim’s life.

I’m not sure the furosemide is working as well as it should, and I have limited my fluids more than usual the past couple of days, so we’ll see how dialysis goes today.  I still have a long way to go to get rid of this excess fluid.

January 24, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Suffering a case of the grumps

I promised myself I’d be as honest as I could be with this blog and not all days are up days.  This is one of those not-so-up days. I seem to be going through a string of them recently.  Maybe it has something to do with the weather, too.

All I know is I’ve been down in the dumps and suffering a case of the grumps for the past few days. Not without reason, comma but…

My legs have been bothering me during the day as well as at night when I’m trying to sleep. They’re hard to the touch and feel tight, especially when I stand and walk. And, of course, my weight going into treatment is reflecting whatever is going on, ie: I had gained like 6 and a half kilos between Saturday and Tuesday.

I’m urinating less. Damn.

I have a difficult enough time trying to limit my fluid intake to a quart and a half a day. If I have to take it down to a quart, I’m not sure how or if I’ll cope with that.

I talked with the nurses after weigh in Tuesday and had a couple of them feel how tight my legs are. They wrote a note to the doctor suggesting we try a diuretic or something to get this fluid moving out of my body.

For awhile — like after 7:30 — it looked like no doctor would be making rounds that evening but just before 8, one came through. She put me on 160 mg of furosemide twice a day to see if we can drain the water from my tanker-truck legs.

I took the first dose last night. Didn’t seem to help much. Maybe it will just take getting some of this in my system before the flushing starts. I hope.

I haven’t been on a diuretic while on dialysis so I’m hoping this will help. Something sure needs to. It’s getting difficult to bend my legs enough to get in and out of the car easily. Think trying to bend an overstuffed sausage to a 90% angle without something exploding. It ain’t easy, my friend.

It also hurts. I tried crossing my ankles while I was reclining during treatment last night. It was too uncomfortable where my calves touched.

Maybe I should try something batty like hanging from my ankles to sleep. Naw, that would probably clog my sinuses more then they stuff up now.

Good things. Let’s think about good things that have happened in the last couple of days.

tick tick tick

um……

tick tick tick

well, I know there has to be SOMETHING

Oh, wait … the knitting is going pretty well. I finished six little pairs of woolly socks for six little orphans in an orphanage somewhere in Kosovo. And three-quarters of a wool stocking cap to send to an American soldier in Afghanistan as a “hug from home.”

Um

Tick tick tick

OK, here comes the realization: I am alive and that is still a very good thing.

The snow has stopped for the moment and the sun is shining and that is still a very good thing.

Life could be worse.

As farmer Hoggett says in “Babe”: “That’ll do, Pig. That’ll do.”

January 23, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 4 Comments

Acquiring a taste

nutrition labelcheddarSo, I’m a big time cheese lover and always have been.  It’s one of the foods most difficult for me to give up on the diabetic renal diet so I, of course, took the bait from Dairy Delicious to try their low phosphorus, low potassium, low sodium cheddar cheese substitute.

I knew it wouldn’t be particularly cheap, but then neither is good cheese.  I tried some last night as a dip for some low sodium crackers. At first I thought, “this is a real waste” but the more I ate the better I liked it.  I think it might be possible to create a passable macaroni and cheese with it and that would be a blessing on this restrictive diet.

It should be pretty good in casseroles, too.

Packaged in 2-ounce plastic tubs, the label touts 90% less phosphorus, 67% less sodium and 85% less potassium than regular cheddar cheese sauce. There are a couple of recipes on the Dairy Delicious site.  Mexican seasonings, green chilies, etc. should make tasty variations, too.

I’m thinking broccoli and cheesy rice might be good, too…maybe some chopped red pepper in there…add a bit of grilled chicken. That could work.

Dairy Delicious also has a low phosphorus, low potassium, low sodium 2% milk that’s shelf stable and according to the Web site can even be used in cooking.  An 8-ounce trial carton came in my package of cheddar cheese sauce.  I used it a couple of night’s ago as a base for some potato soup (one of my all-time favorite winter suppers). I took a little taste before I added it to the soup pot and it seemed to taste just fine. I added some non-dairy liquid creamer, too.

I think the milk would work well for pudding mixes, etc., where the non-dairy creamer can sometimes be too heavy. There are some decent sounding recipes on the Web site for the milk, too.

Dairy Delicious (and no, I’m not a stock holder) is also putting together Mac and Cheese boxed dinners and will soon introduce a ricotta cheese product. Sounds good to me.

January 22, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Closer to a new access

Getting this fistula of mine ready to use for dialysis has been a longer process than I believed it would be.  The outpatient surgery was done September 5 which means it would probably have been ready to use the first week in November, but that’s when my round of assessment appointments at Mayo’s began so beginning access through the fistula was postponed.

When Sue, the nurse who does initial needle placement for the fistulas, looked at the site, her eyes brightened with anticipation at the strong thrill she felt, but she had some questions about whether the vessel narrowed and how deep the vessel was so a fistulogram was scheduled in early December. 

 Results of that came out fine but when Sue checked again, she wanted further assurances and guidance on the depth of the vessels so an ultrasound and “tracing” were completed Monday.

The ultrasound tech traced the path of the vessel — and it’s depth at several intervals — on my left bicep in permanent marker. At dialysis Tuesday, Sue traced the path and “landmarks” from my arm to a clear plastic sheet.  She’ll use that sheet to create a template for the needle sticks. We’re hoping buttonholes can be established so blunt needles can eventually be used during dialysis. 

The other hope, those of you who are regular readers here know, is that I will be able to knit during dialysis when the fistula is being used.  There’s a pretty good chance that will happen. I’m hoping so because knitting makes the sit-and-wait part of dialysis less frustrating.

Sue’s schedule is chock-a-block full of meetings next week, so the initial flight of the fistula with be the week after next.  Keep your fingers crossed, por favor.

I really do appreciate Sue’s efforts to help me continue knitting during treatments.  She really is trying to make dialysis less intrusive in my life and I truly appreciate that commitment to patient care and the extra time it means she’s taking with this.

Another of the nurses at the center, who shall remain nameless here, when consulted by Sue, snapped something to the effect, “well, you may just have to give up knitting or find a new hobby.”

I bit my tongue on that one. What I wanted to say is, “OK, let’s just trade places here for a week or two and see how well you like the prospect of 12-13 hours a week chained to a chair and a machine watching old reruns or stupid ‘reality’ shows and feeling unproductive as hell.”

But I didn’t. And she probably didn’t deserve that kind of answer either, the operative word being probably. She’s generally a good nurse and seems to care about the patients and our comfort although her extra administrative duties sometimes make that less than apparent.

It’s kind of like when I mention the fact I think the unit needs a blanket warmer. Actually not so much for my own comfort, though there are evenings that that would certainly be nice, but for other patients who sit and shiver and complain about the cold. 

Is there anything more miserable than sitting and shiverring and feeling you can never get warm? If you’re tied to a chair, unable to move around and not at home where you can grab an extra blanket or sweater, it’s miserable and you just keep getting colder and colder ’til you’re cold to the bone. Try that for four hours.

When I mention the blanket warmer to the staff, there’s a kind of universal horror that comes across their faces: “Do you have any idea how many blankets we’d have to pass out every day? We’d need to hire an extra person just to do that and laundry would kill us.”

OK. So talk to the auxiliary. Maybe they’d not only fund a blanket warmer but pay someone to just hand out blankets. They could make things a lot more comfortable for about 100 patients a day with just that one addition.

Ask any baby, a warm blanket can go a long way in making bad things feel better.

And while we’re at it, isn’t there a better way to handle “hot packs” for cramping?

Years and years ago when I was an aide in a physical therapy department, we had special sand- and jelly-filled hot packs that would swell in warm water and retain heat for at least 20 minutes. They were wrapped in pouches of multiple thicknesses of terrycloth equipped with snaps so the packs could be wrapped to offset the initial onslaught of heat that can burn patients.

Today’s modern dialysis unit – at least the one where I receive treatment – has someone run the tap water until it’s hot then fill a plastic bag, tie it and wrap it in a towel. The only assurance they have that it’s not too hot is asking the patient.  That can be a little tricky when you’re dealing with diabetic patients who often suffer from neuropathy in legs and feet that leaves the patient unable to register things like pain or heat or cold. A large proportion of dialyis patients are diabetic. 

Back to my original point, isn’t this supposed to be about paitent comfort rather than convenience for the staff?

It’s difficult to run as many patients through treatment as the center does and they do a pretty remarkable job keeping patients at the top of priorities in a situation that can get a lot like herding cattle for branding, but from the patient’s view, things could be improved.

Just sayin’.

Another voice

I stumbled on another kidney dialysis journal/blog I think dialysis patients, staff, family and friends might enjoy.  Check out Jack’s Kidney Adventure.

January 17, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 1 Comment

Disturbing

Diane and Jim

Jim Wilson and Diane Langton before his transplant

The first thing I saw when I returned to work and checked this morning’s paper was a story about the death of Jim Wilson, a young New York man who died Sunday.

I really didn’t want to read further because in 2004 Jim was the recipient of a kidney from Diane Langton, a coworker. I truthfully didn’t want to learn  that Jim had died from complications of the transplant.

I had talked with Diane about a month ago and asked her how Jim was doing. Fine, she told me, and he was enjoying life without dialysis. Jim was born with only one kidney and when that began to fail, he needed dialysis.

I wondered, as I first read the news, if Diane somehow felt her generous sacrifice has been wasted and then automatically knew that would not be the case. Diane offered a kidney to Jim when she learned the family had been scammed by another Cedar Rapids resident who began to ask the family for money to complete the transplant procedure. That’s illegal.

Diane felt so badly about how the family had been treated that she began to wonder if she could donate a kidney, did the research to discover she had the same blood type, prayed over it and began to keep a journal of her feelings and experiences as she became Jim’s wish-granting angel.

She glowed – with great sincerity – about her opportunity to make such a big difference in someone’s life, in fact to give him life, so I knew she would never regret her decision to help a complete stranger.

When Chris, another coworker, came in and expressed her empathy about Jim’s death and how it must be affecting Diane, I said I hadn’t had the courage to read the story yet because I did not want to know the death was caused by the transplant. I was hoping perhaps for a freak car accident or something totally out of the blue.

Chris, soft-hearted friend that she is, immediately said, “Oh, I didn’t think about your situation.  I’ll read it and let you know if it’s OK for you to read.” I told her I did intend to read the story, but before I got to it, Chris said it was OK to read, though it wasn’t a car accident.

What it was was a heart attack and of course in some ways that probably was partially caused by the kidney problems Jim suffered.  High blood pressure goes along with kidney woes and that isn’t always “cured” by a new kidney.

When I read the article, it also told me that my intuition about Diane’s reaction was correct. Here’s the last few sentences:

Langton said the four years she gave Wilson was more than worth it. “I would do it all over again,” she said. “I helped someone have a better life.”

Diane was an inspiration then and still is today. Her generosity and sincerity touched me during the process and became even more special in my mind and heart when my kidneys failed. Nothing like a brush with that reality to emphasize how special living donors are, especially those who donate to strangers.

January 16, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

The cold subsides

I’m feeling quite a bit better and not sleeping quite so much. I don’t know if the ESRD has compromised my immune system further – I suspect it has – but this is the second cold of the winter for me and that’s unusual. I’m pretty religious about getting my flu shots and they usually help fend off colds, too, for the better part of the winter.

I’ve been taking zinc and extra vitamin C (fresh from the lemons and limes), and I think that helped keep the congestion from getting intolerable.  But the sleep thing, that’s a different story. I slept and slept and slept the past week. I took a day and a half sick time from work – and slept. And had already set my New Year’s holiday for Thursday – and slept.

I was up early on Friday, though, to attend a cousin’s funeral in Muscatine. Larry wasn’t the first of the cousins to go and since he had cancer three times over (pancreas, esophogus and lymph) and had been battling it for 8 years,  it’s difficult to mourn his physical death.

It was good to see so many of his brothers and sisters. Larry came from a big family. His dad, Irvin, was my mother’s brother. By the end of the day, after hours of catching up and remembering, my cheeks hurt from smiling and I had been well-hugged over and over again.

Why we wait so long to gather as families is another mystery of modern life. I took my digital camera so I could get photos of all the cousins and spouses there and took a pic of Mom before I left on Friday so I could share it with them.  If it sounds as if it’s been many years since I’ve seen these cousins, it’s totally correct.

Irvin’s family was always fun to visit or have visit because there were so many lively kids – 9 living – and they lived in the country, a rather exotic place to a city kid. The 7 boys were all handsome, the 2 girls breathtaking, all with these remarkably beautiful sparkling eyes.

I had a cousinly crush on all the boys and a big-time one on Larry, a confession I admitted to at the funeral as well as telling his wife, Nancy, who fit into the family like a hand in a well-loved glove, for the first time how my heart fluttered on their wedding day when Larry kissed my hand.

Irvin’s family was poor, no getting around it and no euphemisms. There’s a line from Stephen Vincent Benet’s poem Mountain Whippoorwill that always kind of reminded me of the kids: “raised running ragged through the cockleburs and corn.”

But there always seemed to be love among the brothers and sisters and lots of pride for them from Uncle Irv. I learned alot of things from the times I visited from how to pick cherries to how cold it can be to head to the outhouse in the middle of the night when there’s frost in the air. And I can’t forget my first try at plucking a chicken or seeing a baby goat born or smelling a hayloft.

All those childhood memories bubbling up felt good and behind all those grown-up faces were still the eyes and smiles of those kids I remember.  It’s hard to imagine that Rick and Rhonda, the youngest of the brothers and sisters, are grandparents several times over.

Uncle Irvin would be so proud of his kids.

January 14, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment

Looking for a little inspiration

“Decide that you are worth the risk of taking action, and that your dreams are not to be sold out. Know that putting yourself at risk may be scary, but it will be worth it. You must leave behind the comfortable and familiar if you are to move onward and upward.”  —Dr. Phil

OK. I’m trying to put the brakes on. Trying to get out of pity party mode and back on the path.  Trying to rid myself of excuses, clear my environment and set things up for success again…now, before I end up in the mudhole at the bottom of the slippery slope.

I’m sick on top of being sick. I have a cold now, on top of all the other sh– (fill in the blanks) and you know how an addict is, any (insert drug of choice) in a  (insert crisis or celebration of choice).

My bootstraps seem too far down to reach at the moment. I have got to get out of this mode because it is NOT doing me any good. In fact, it’s hurting my goals which is hurting my life.

Everything seems so serious. Every little thing has such seemingly huge consequences. It seems the opposite of “don’t sweat the small stuff.” Even the small stuff seems to carry huge weight, pun and reference fully intended.

“Decide that you are worth the risk of taking action, and that your dreams are not to be sold out. “

OK. What is my dream? To be healthy or as healthy as I can be. Why is that my dream? Because I’m not willing to give up life yet and I am so tired of feeling sick and tired. There are many things I want to see and do yet and right now I can’t see or do them not just because of dialysis but because of my general health.

The truth of “move it or lose it” is bearing down on me and I know in my mind that I’m the only one who can make it better. My heart wants the doctors to do it for me.

I have to move. If I am ever able to do the things I want to do, I have to be able to move.  A new kidney isn’t going to do that for me. I have to do that. I have to get up and move, get on the treadmill — or the sidewalk, lift a weight or two.

I have to quit eating and justifying when I break the plan.  It’s been nearly two weeks now and the slope is getting slicker by the moment.  Why do I sabotage myself even now when I know it’s a life and death question? Why?

I’m the only one who can sell out this dream. Why do I do it so easily? The dream really isn’t that much, is it? It’s a small thing that seems like Mount Everest to me. God knows it’s difficult enough to climb a flight of stairs let alone climb Everest. 

So now the little voice in my head that says all the right things as if I believe it emotionally as well as intellectually is saying: “Even climbing a mountain takes one step at a time. You can take one step at a time. DO IT!”

“Know that putting yourself at risk may be scary, but it will be worth it. “

Am I putting myself at risk by losing weight? I must be because it is and always has been so difficult for me to do. So difficult that I’ve never done it successfully.  Sure, I’ve lost weight before. Hundreds of pounds, to be perfectly frank.  But I’ve never been successful at keeping it off and this has to be a lifelong commitment because losing weight is what can give me my dream of better health. 

Not only to lessen the chances of negatives from a kidney transplant, but my diabetes, my arthritis, my sleep apnea: All would benefit from my weight loss.  So what keeps me from doing it? What, as Dr. Phil would say, is my payoff?

Instant gratification? Yes, I admit that.  I love food but I’ve also found that with the right spices, etc., I love food that I can eat without mourning the foods I can’t. That doesn’t mean I should eat a ton of “good for you” foods either.

What am I putting at risk if I make my life healthier? I truthfully can’t think of a thing. I often wonder if, when I was younger, I actually thought I would be taken more seriously if I carried more weight.

Then again, I was first put on a diet by a doctor when I was 8 years old.  I don’t think I was trying to hide my beauty at that age and if I eat to fill a void in my life, that void started terribly early.  In fact, my mother tells me that I required supplemental feedings in the hospital right after I was born.

But I’m neither an infant nor a child at this point in my life. I am what I am and I like myself even though I don’t like my body image or the fact that weight is hampering my life in so many ways.

If I acknowledge all of that, why should it be scary for me to take control and defeat this enemy?  Maybe there is a bit of epiphany today.  It is the enemy and why should I succor the enemy?

“You must leave behind the comfortable and familiar if you are to move onward and upward.” 

Leave behind the comfortable. How I eat — at least in the past — is the comfortable for me.  I know what combinations to put together to make my tastebuds happy…some of those add no weight whatsoever.  Those I can retain.

What I need to do is remove the calorie-loaded comfort food from my environment.  The most effective way would be to do so physically, but that’s difficult to do when another person lives with you — do not use that as an excuse — acknowledge that it’s difficult and go on from there? Is vanquishing any enemy easy? I think not.

So I need to bolster my environment against the enemy and make sure I take time each and every day to prepare for the battle.

Do it. Do it. DO IT!

I hope this little pep talk hasn’t bored the bejesus out of you, but I needed it.  I’ll let you know tomorrow if I was able to screw my courage to the sticking post.

Please, leave a comment and give me a bit of encouragement. I need all the allies I can muster.

January 6, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | 3 Comments

Get thee behind me

I’m feeling a bit overwhelmed today. I just deleted the rest of that sentence that said “and I’m not sure why.”  I am pretty sure why: It’s all these medical problems and the fact that it seems more complications arise daily.

Today I’m dealing with the idea that I probably need to be a lot more aggressive in treating my lymphoedema, or at least that’s what I think it is based on a diagnosis several years ago by my family  doctor and some reading on the internet.

The restless leg syndrome stuff isn’t the only thing bothering my legs recently. My calves also feel hard, 360 degrees around from my ankles that feel tight and nearly unbendable most of the time to nearly my arthritic knees. And they hurt. To the touch and on their own.

Then there are the mini saddlebags at the back of my knees caused by the extreme amount of fluid I was carrying in my tissues.  They’ve never quite gone away and now the “cores” seem to be hardening, too.

When I asked one of the Mayo doctors why my legs felt hard, he said the edema in them had begun to turn fibrous. That explains the hardness. What he didn’t say was that that’s one of the progressive symptoms of lymphoedema. Nor did he say how fluid can turn into fiber.

 And the cure for lymphoedema? There is none.

Treatments vary from :

1) “manual drainage” (translate that to gentle massage)

2) wrapping – a very, very complicated process involving elastic bandages wrapped from toes to hip overlaying  a kind of cotton batting-like material and a liner. Wrap compression is tighter at toes and lesser at the thighs. It usually takes longer to wrap everything than it does for the wraps to start falling down the legs which means the best time to wrap limbs is before bed. Sleeping thus wrapped is nearly impossible. Add a CPAP mask and its full-force wind in your nose and mouth and you can pretty much forget about sleep until you’re so exhausted you’d fall asleep in a the hopper of a cement mixer.

3) compression machines which wrap the limb in a vinyl balloon that inflates periodically to push the lymph fluid toward the trunk of the body. Some say they don’t work very well.

All of these treatments take time and money, commodities that are becoming ever more scarce in my life.

Maybe the account from Mayo’s I received in the mail Dec. 31 added a bit to this overwhelming feeling too. Cost of the assessment appointments, over $34,000. My initial share of the costs: $762. There are still insurance claims out in the amount of $22,000 so my cost may well go up.

Yeah, it’s only money and yeah, it was/is worth it and yeah, having insurance makes it an option at all. But I just feel like my own medical needs are nickel and diming me mercilessly and constantly.

Getting this out and “on paper” doesn’t seem to be helping my feelings of being overwhelmed. So, what can I do to help the situation:

1) Get my fluid intake back under control. I came off dialysis last night about 3.5 kilos over my last dry weight. All my fault and most if not all celebrating with fluids during the last week of 2007. Getting the excess fluid out of my system will lessen the tight feeling in my legs, though it won’t rid it completely.

2) Get back on the treadmill – daily – or make sure I get extra walking in somehow and somewhere. Too much exercise, the internet source i read (mainly from the Mayo site) can exacerbate lymphoedema so I’ll have to do some more research on that.

3) Lotion my legs and feet every day. Doesn’t do much for the aches and pains, but helps to belay possible infections.

4) See my family doctor for some more suggestions and encouragement.

5) Keep at the forefront the fact that life is worth all this.

This stuff follows you every day, every where, every minute, every bite, every swallow of liquid.

Growing old ain’t for wimps.

January 2, 2008 Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss | Leave a comment